Housebound and almost bedbound with ME/CFS, now somewhat better with Mestinon
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jun 2026
In their words
- Condition: ME/CFS
sometimes I feel sort of ok (not ok ok, just ME/CFS ok...).
In context ↗ - At worst: Severe
After I got completely housebound and almost completely bedbound it somehow disappeared.
In context ↗ - Now: Somewhat better
I'm still in the severe corner, but it's bearable for which I'm forever grateful!
In context ↗
Read from 25 of their posts and comments; links to the 13 this page draws on
Summary
Alder 92414 has had ME/CFS since at least 2018 and became completely housebound and almost completely bedbound. Over the years they improved into the severe range, crediting Mestinon with shorter, milder PEM and a lower heart rate, and relying on amitriptyline 50 mg for sleep. They still used a wheelchair and mobility scooter. A major relapse in 2025 brought back a chronic sore throat and they recovered after about six months.
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What they tried
What they credit
Also tried
Their words about each treatment
- therapist · Not said
I have a therapist who tries to teacch me how to listen to my body.
In context ↗ - mindfullness/bodyscan activities · Helped
After I lie down for half an hour and doing some mindfullness/bodyscan activities, the rush diminishes
In context ↗ - amitriptyline · Helped
I'm at 50mg a night and I can't live without it
In context ↗ - Mestinon · Helped a lot
It improved my situation by 100%. Got it from an me/cfs specialist.
In context ↗ - keeping my boundaries · Not said
Yet I do have to keep my boundaries very seriously.
In context ↗ - cannabis · Helped
I started a few months ago and it really helps to take decent rest and reduce the constant stress in my body.
In context ↗ - d ribose · Worse
It gave me diarrhea.
In context ↗ - Garmin · Helped
It helps me to accept it instead of fighting it.
In context ↗
Approaches: POTS medication
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| — | ME/CFS onsetnot ok ok, just ME/CFS ok...In context ↗ | |
| — | completely housebound and almost completely bedboundAfter I got completely housebound and almost completely bedbound it somehow disappeared.In context ↗ | |
| 2019-2021 | improved over the years; Mestinon made PEM milder and shorterIt's my magic candy, can't live without it anymore. Less and less severe crashes, shorter 'downtime', feel less sick, pots is better manageable.In context ↗ | Mestinon / pyridostigmine |
| 2025 | major relapse with chronic sore throat returningLast year I had a major relapse and I got the chronic sore throat back.In context ↗ | |
| 2026-06-20 | back to previous baseline after the relapse; still severely affectedAfter about six months I recovered and the sore throat also went away again.In context ↗ |
Adverse events
- Mestinon / pyridostigmine“After every increase the side effects would come up for a few days and then went away.” In context ↗ Side effects
- Amitriptyline (Elavil)“The increase from 20 to 50 though was a bit nasty though, but most side effects stopped after a few days.” In context ↗ Side effects
- “It gave me diarrhea. I will spare you the details” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
My PEM is triggered less easily and when it hits it's only half as bad as before and lasts for half the time.
In context ↗ - Brain fog
My brain fog has been reduced so I'm able to use my brain again every now and then.
In context ↗ - POTS & dysautonomia
My heart rate (also have POTS) is overall lower
In context ↗ - Sleep problems
Most important for my sleep are amitriptyline and mestinon.
In context ↗ - Flu-like symptoms
Last year I had a major relapse and I got the chronic sore throat back.
In context ↗
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